Tuesday, June 19, 2018

First, I'd like to thank all of the kind souls who sent me notes of support and advice since my last post, which detailed the recent medical tumult I was going through. I apologize for not replying to any of them, as it turns out the events recounted in my last essay where only opening stanzas of a longer composition. I'm afraid most of the notes and comments sent will have to be left without response, but please know they are appreciated beyond words. And now, on with the continuation of my woeful saga.…

When last I left you, dear readers, I told the tale of my supposed kidney stone and the pain and misery it caused (if you missed my last post, click here to catch up). Well, turns out that was only the beginning of the story…

After my visit to the ER two Sundays ago, catalyzed by searing, unbearable pain in my right lower back and flank which was diagnosed as most likely caused by a recently passed kidney stone, I went home and took to the bed, expecting the pain to diminish and eventually dissipate completely. Instead, the agony steadily grew worse, so much so that I started taking oxycodone to try to take the edge off. I HATE taking opioids, because in my experience they really don't diminish the pain but just get your head so fogged up that you're not really cognizant of it or anything else, for that matter. Since my mind is one of the last things that is still fully functional, I'm quite reticent to screw with it. But the pain in my right side was intense and unrelenting, so I hopped myself up on goofballs and tried to ride out the storm.

By Tuesday afternoon, despite my being junked up on the legal equivalent of smack, the pain in my back and side had me writhing in my bed. I called the doctor and was told to get my sorry ass immediately back to the emergency room. Ugh.

Emergency rooms are surely included somewhere in Dante's Inferno, and normally I'd rather gouge my eyes out than have to deal with the ER and the minions of Satan who inhabit it. But the pain in my back far eclipsed any I would have engendered by said eye gouging, so off to the ER I went. Note: in actuality the people staffing emergency rooms are dedicated and hard-working, doing a job many others in the medical profession shun. And the ones I interacted with during both of my visits were actually quite nice and tried to make the experience as bearable as possible. But since they work in the bowels of hell, one can come to no conclusion other than that they must be demonoids. Very nice and dedicated demonoids, but underlings of the Prince of Darkness for sure.

Once back at the emergency room on Tuesday, all the tests previously done on Sunday were replicated – blood tests, urine analysis, and yet another CT scan. I wasn't thrilled about having another CT scan, since these expose you to a tremendous amount of radiation. In the case of abdominal CT scans, of which I had two in the space of two days, each exposes the patient to the equivalent radiation of 400 chest x-rays (click here). So, I will be able to read by the glow of my own belly for the foreseeable future. On a positive note, my wife and I should see some significant savings on our electric bills.

After all the tests were complete, no new significant findings were discovered except for the presence of a few white cells in my urine. This meant I might have a kidney infection, so cultures were ordered. Mercifully, while I was caught in the tendrils of Hades for hours and hours and hours the horrible pain I'd been experiencing for days started to subside, for no discernible reason. Not one to look a gift horse in the mouth, I asked no questions and was only grateful for the relief.

I was scheduled to see a urologist the following morning, and when I showed up for the appointment he took one look at the CT scan reports and immediately noted that among the findings were that I had a very distended bladder. An ultrasound revealed that my bladder was indeed quite enlarged, so the urologist informed me that I was likely retaining urine and told me he needed to catheterize me in order to drain my bladder. Yikers!

By this time I was so worn down by the events of the previous four days and my mind so bedraggled by the after effects of pain and opioids that I could barely utter a peep of protest. Before I was quite fully aware of what was happening, a tube was being snaked down my trouser worm, yet another lovely experience bestowed upon me by multiple sclerosis, the gift that keeps on taking.

After the catheter was inserted, out of my bladder poured forth at least three times the amount of urine that a human bladder should hold. Seems I had been retaining urine for quite some time, and this might have explained, according to the urologist, the pain emanating from my kidney. One problem with this theory is that, as I noted above, the pain had begun to noticeably dissipate the night before while I was in the ER, before the urine was drained from my bladder. Of course, the urologist stuck to his guns with his theory, as so many doctors are wont to do.

The cavalcade of whimsy that started when the pain first struck on Saturday only continued to gain momentum when the urologist strongly recommended my having a catheter inserted again, this time to stay in place for about a week, in order to "give my bladder a rest ". Of course, this would mean I'd urinate into a bag attached to the catheter for that week, the prospect of which I was none too keen on. I doth protested vociferously, and negotiated him down to 36 hours, a figure neither of us was very happy about. He mentioned the prospect of my perhaps needing a catheter permanently, which started a conversation about quality versus quantity when it comes to life, which I won't go into here but should be fodder of a different kind of blog post.

Suffice it to say, I went home with a tube sticking out of my ukulele, a urine collection bag strapped to my leg. My angelic wife, who has been by my side through this entire twisted ordeal, took along with her a bigger collection bag to be used when I got home, in place of the much smaller leg bag. Yippee!

After he consulted with the urologist, my neurologist called me none too pleased about my unwillingness to be catheterized for the recommended full week, and a patient-doctor tiff ensued. After 14 years, my neuro and I have developed a genuine mutual affection, but this time around neither of us were all that happy with each other. I pointed out that I had been urinating noticeably less ever since my infusion of Rituxan about six weeks ago, which I blamed for my distended bladder. My neuro insisted the Rituxan could have no such effect. Having had extensive experience administering Rituxan, he'd have none of this. Regardless, he strongly urged that I do the catheter thing for more than 36 hours, a suggestion to which I rejected vehemently. Call me Mr. Cranky Pants.

After we got off the phone and I calmed down a bit, I reflected upon his advice and decided that he was likely correct. No sense playing with fire, and I certainly didn't want a reprise of the horrendous pain I'd experienced, so I spoke to the urologist and agreed that I would keep the catheter in through the weekend.

And what a weekend! Having a tube shoved up your schmeckel for days on end is more fun than a night at the GiggleSnort Motel – not! My dear wife became quite adept at draining urine collection bags and switching between the leg bag and big mama bag, after a few false starts resulting in the dispersal of urine in places it shouldn't be dispersed. Since my right arm and hand are completely paralyzed and useless, and my left, while still functional, is getting increasingly less so, I was unfortunately of limited help with these various processes. I felt about as useful as a condom dispenser in a lesbian bar.

Finally, Monday rolled around and it was off to the urologist to get the catheter removed. Getting the tube yanked out of my tallywhacker, the prospect of which caused considerable anxiety, turned out not to be so terrible – hardly noticeable, in fact. I'll see the urologist again in 10 days, and hopefully between now and then things in the plumbing department will get back to what passes for normal in a multiple sclerosis patient. Over the last few days I've finally begun feeling better, so hopefully I'm in recovery mode.

The urologist informed me that the urine cultures turned out negative, so I didn't have a kidney infection. The CT scans never showed evidence of a kidney stone, and I remain unconvinced that my bloated bladder would result in such an acute pain focused on one specific area of my body. So the cause of my agony remains a mystery. As does the exact nature of my neurologic disease (my MS diagnosis has never been able to be confirmed), as well as the roots of my widespread endocrine dysfunctions, which continues to defy reasonable explanation.

Given the mass of mysteries surrounding my various debilitating medical conditions, I can only come to one logical conclusion: somebody somewhere has a voodoo doll of me and is using it as a pincushion, or maybe as a dog's chew toy. Of one thing I am certain – somebody put the Whammy on me.

In that spirit, the song that has been running through my head nonstop this week, as I lay in bed with a tube sticking out of my stubby cudgel contemplating my slowly spiraling the drain over the last 15 years, has been this one. Written and performed by the one-of-a-kind Screamin’ Jay Hawkins, a man who is reliably reported to have fathered over 60 children, it expresses precisely the sentiment I've been feeling: someone put a spell on me, and not in a good way…

Monday, June 11, 2018

I was fully planning on writing a new blog post this weekend, filled with actionable MS information, wisdom, humor, pathos, and astonishing literary flourishes. Instead, I was sidelined by the WORST pain I've ever experienced in my life.

Woke up Saturday morning feeling relatively okay, but after a few minutes was hit with a horrendous stabbing pain radiating from the right side of my lower back. The pain was so intense that it pretty much paralyzed all the parts of me that aren't already paralyzed. I was rendered dazed, confused, and writhing in bed, and it took me several minutes to work up the strength to call out for my wife. She did a quick consultation with Dr. Google and came up with a likely culprit: kidney stones.

I soon spoke with a family member who dealt with a kidney stone a few years ago, and she told me that there was really not much to be done other than to rest and wait for the stone to pass.

So, I did just that – rested all day Saturday and Saturday night, and though the pain did start to subside I still felt pretty miserable when I went to sleep late Saturday night.

Woke up Sunday and after a short while was once again hit with a monstrous jolt of pain emanating from the same area in my right lower back. As soon as I could muster the wherewithal, I called my neurologist, as I no longer have a primary care physician. This is because the doctor who had been my PCP for 17 years decided to become a VIP physician, requiring patients to pay $3000 a year just for the privilege of being able to get an appointment with him – please, don't get me started. Turns out the world is filled with vampires, some of them hiding in plain sight.

My neuro told me I should immediately go to the emergency room, which I did just as soon as Karen heroically managed to untangle me from the bedding, get me into some street clothes, and then into my wheelchair.

At the hospital, the ER team did standard blood tests and urinalysis, as well as a CT scan. The blood tests came back relatively normal, the urinalysis turned up traces of blood, and the CT scan showed inflammation in my right kidney, but no kidney stone. I was told that I very likely had recently passed a kidney stone without knowing it, and the stone may have done some damage its way out.

Not sure I entirely buy that explanation since I feel really sick, as if I have an infection. Nevertheless, a recently passed kidney stone is the party line, at least for now.

I did do an infusion of Rituxamab about six weeks ago, so I'm not sure that a standard blood test would actually show the typical signs of infection since my body has been wiped clean of B cells. The doctors in the ER didn't really seem to understand the potential significance of my having taken Rituxan, and appeared to be pretending to know what I was talking about when I told them I was on the drug. Just another example of our modern medical miracle machine showing that in large part it is made up of chicken wire and chewing gum.

I'll be seeing an urologist early this week to try to get the situation clarified and resolved.

Anyway, just wanted to let WK readers know that I'm still among the living, despite my not having put a new essay on the blog in over a month. I have some good ideas for new posts, and also a very long interview I conducted with a naturopathic doctor who works exclusively with MS patients that should prove to be enlightening once I get it transcribed. All of this is unfortunately on hold, however, until I start feeling a bit better. Hope you will bear with me…

Since I associate almost everything that happens in my life with one song or another, here's the song that's been playing on a loop in my head ever since my wife uttered the words "kidney stone"…

Tuesday, June 5, 2018

(I rarely deviate from the MS/disability theme of this blog, but there are some things that are more important than multiple sclerosis. This essay was first posted seven years ago, in 2011. Given the current ruinously divisive degraded and degrading political climate in the United States of America, I believe the words and deeds of Robert Kennedy are more important now than ever. With a few changes, perhaps a word or phrase here or there, the speech Kennedy delivers in the video at the end of this essay is as relevant today as it was 50 years ago and should be taken to heart by those of all political stripes in this troubled nation of ours. Black or white, conservative or liberal, rich or poor, red state or blue state, Democrat or Republican, we're all in this thing together. Despite assertions otherwise, facts remain facts, lies remain lies, and ultimately the truth will win out. We are in desperate need of our own Bobby Kennedy. For those who receive this via email, the video can be viewed on the Wheelchair Kamikaze website – click here)

I am a man with few heroes.

It disturbs me to see the word hero tossed around indiscriminately these days, as it belittles the few individuals who truly deserve the honor. Though I respect many people, some deeply, there are only a few whose words and deeds have led me to try – usually with pathetic results – to emulate the examples they set through their words and deeds. One such person is Robert F Kennedy, who was felled by an assassin's bullets shortly after midnight on June 5, 1968, 50 years ago today.

Bobby Kennedy was by no means a perfect man, his shortcomings well-documented by numerous tell-all books and our insatiable gossip hungry media. Back then there was still, for better or worse (I think for better), a separation between the public and private lives of our political figures. Show me almost any celebrated historical leader and I'll show you skeletons in their closet that today would have ended their careers before greatness could have ever been realized. RFK was a complex individual; intelligent, introspective and headstrong, possessed of powerful ego and at times known to be ruthless in achieving his political goals. But he was also an idealist, a man whose thoughts and the actions driven by them evolved through a life transformed by devastating personal tragedy. After the assassination of his brother, President John F. Kennedy, Robert Kennedy went through a long dark night of the soul, only to emerge with a deep resolution to further devote himself to public service and fight for his deeply held moral convictions against social injustice, fashioning himself into a champion for the weak and disenfranchised.

Robert Kennedy started his political career working in the office of the now justifiably vilified Senator Joseph McCarthy, who at the time was in the midst of his wretched early 1950s anti-Communist witchhunt, a hideous debacle which resulted in the destruction of the reputations and lives of dozens of innocent victims. From those ignominious beginnings sprang a career that saw Robert Kennedy champion civil rights, advocate for the poor and marginalized, fight organized crime, and play an instrumental role in pulling the world back from the very brink of nuclear Armageddon during the Cuban Missile Crisis.

After his belated entry into the 1968 presidential race, his campaign to win the Democratic nomination gained increasing momentum, culminating with his triumph in the California primary on June 4, 1968. Minutes after delivering his victory speech at the Ambassador Hotel in Los Angeles, he was shot while attempting to exit the building with his entourage. Though an assassin, Sirhan Sirhan, was named and convicted, controversy still rages over the tragic sequence of events that transpired that night. Robert Kennedy lingered for 26 hours, and died at 1:44 AM on June 6, 1968.

Had Kennedy won the nomination and eventually the presidency, our historical timeline would certainly have been significantly altered, perhaps resulting in a future absent much of the social and political upheaval that was to come. There would have been no violence on the streets of Chicago during the 1968 Democratic convention, no President Nixon, no Watergate scandal, a quicker end to the Vietnam War, and no massacre at Kent State. Without these traumas inflicted on the collective psyche of America one can only imagine that the arc of history might very well have been much more benign than the reality that has ultimately come to pass. The promise represented by Robert Kennedy cannot be overstated, nor can the tragedy of his loss.

Perhaps the best way to illustrate the merits of Sen. Kennedy is to let the man speak for himself. On April 4, 1968, just two months before his own assassination, Dr. Martin Luther King Jr. was gunned down in Memphis, Tennessee. On the evening of the King tragedy, Bobby Kennedy was scheduled to address an inner-city crowd in the heart of Indianapolis, Indiana. Knowing that his audience would be largely black and likely unaware of Dr. King's assassination, which had occurred just a short time before, Kennedy had little time to formulate his thoughts much less write a polished speech. Without the help of aides or speechwriters, he jotted a few notes to himself during the ride to the rally, and then delivered an eloquent and profoundly emotional address. No teleprompters, no calculations of political consequences, no prepared text, no asinine twitter tantrums, just intelligent and respectful words delivered from the heart and soul. He didn't speak down to his audience but addressed them as peers, sharing with them the anguish of his too having suffered the murder of a loved one. As a direct result of this speech, Indianapolis was one of the few American cities spared vicious riots in the wake of Dr. King's assassination.

Here is the speech Robert Kennedy delivered that night, from the back of a flatbed truck…

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...